Chat Transcript: Dr. Garth Nicolson on the Role and Treatment of Chronic Infections in Fibromyalgia Syndrome

Exclusive ImmuneSupport.com Chat with Dr. Garth Nicolson on "The Role of Intracellular Bacterial and Viral Infection in Fibromyalgia Syndrome: Diagnosis and Treatment."

Dr. Nicolson is the President, Chief Scientific Officer and a Research Professor at the Institute for Molecular Medicine in Huntington Beach, California. He is engaged in research on the role of chronic infections in a variety of illnesses, such as Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, Gulf War Illness and various autoimmune diseases.

05/01/02 14:56:29 Moderator: Thank you for joining the Fibromyalgia Chat room! Currently there is a special chat taking place with Garth Nicolson, Ph.D. Please direct all of your questions to Moderator and your question will be answered in the order it was received.

Myeika: How long have you been working with mycoplasmas?

DrNicolson: Chronic, fatiguing, autoimmune illnesses and other chronic conditions, are often associated with a variety of infections. These infections can be the cause of the disease, a cofactor in the disease, or simply an opportunistic infection that causes patient morbidity.

FMS is characterized by the presence of bacterial and viral infections. Common among these infections, are mycoplasmal and chlamydial as well as viral infections, such as HHV6. At the FM conference in Orlando which starts this Friday [May 3], I will be discussing our research on these types of infections in FM patients. My presentation will cover the diagnosis of chronic infections in FMS, as well as their treatment.

Moderator: Here is our first question: How long Dr Nicolson has been working with mycoplasmas?

DrNicolson: The last eight years, approximately.

Moderator: Is there a yeast connection to CFS and/or FM?

DrNicolson: Yes, there is in many patients. Chronic infections including fungal infections as well as viral and bacterial infections are commonly found in patients with a variety of chronic illnesses.

We have found that FMS patients show high rates of chronic infections, especially mycoplasmas (~60%%), and HHV-6 (~30%%).

Moderator: Can Dr Nicolson say how many species of mycoplasma are being found to cause problems with these illnesses?

DrNicolson: We do not know the exact number of different species of mycoplasma that can cause morbidity in humans, but most researchers feel that about 6-10 are important.

Moderator: How does yeast play a role in FMS and CFS?

DrNicolson: Fungal infections like other types of infections cause morbidity (sickness) by interfering with the normal metabolism and colonizing tissue surfaces.

Moderator: Is there any correlation between mycoplasma/meningitis and FMS?

DrNicolson: Although we do not know the exact role that mycoplasmal infections play in this process, it is well documented that that these infections can invade the CNS and cause signs and symptoms.

Moderator: What, if any, therapies have actually cured someone with FM or CFS? Not just temporarily, either.

DrNicolson: Therapies for most chronic illnesses are complex and involve a number of strategies, including treatment of chronic infections.

Moderator: How long, on average is it taking for the Doxycycline treatment to get rid of mycoplasma infections?

DrNicolson: This depends on many factors, including the nature of co-infections, state of the immune and endocrine systems, among other factors. Some patients will see relief from their signs and symptoms within a few months of treatment but others may require long-term therapy, especially if their immune systems cannot control the infection(s).

Moderator: Can you have an underlying mycoplasma infection and not have any "apparent" symptoms, yet still have CFIDS?

DrNicolson: This is certainly possible, but unlikely. Although a small percentage of people are carriers (as has been found in many types of chronic infections), most people will have some type of symptoms if infected.

Moderator: Do you think a TENS unit is helpful for pain?

DrNicolson: We don't know if the trigger points themselves are associated with focal infections, but this may be likely as agents such as mycoplasma and other intracellular infections attack peripheral nerves.

Moderator: How often are people diagnosed with both FM & CFS?

DrNicolson: Patients are often diagnosed with both CFS and FMS. This happens because the signs and symptoms overlap. The characteristic focal and muscle pain characterizes FMS from CFS.

Moderator: Here in Australia they have recently discovered staphyloccal infections in the nasal passages of those with FM & CFS. Have you heard of this and what does it mean for those with FM? I mean implications for treatment, symptoms and curing?

DrNicolson: Staph infections are commonly found in chronic illness patients, and because these types of infections release toxins that can cause pain they are likely important in FMS and other illnesses.

Moderator: Are you aware of cases where there has been person-to- animal (dog) or animal-(dog)-to-person infection in CFIDS?

DrNicolson: Yes, we often find that patients who have pets report that their pets are showing at least some of the same signs and symptoms. When we analyze the blood of the pets we often find the same chronic infections as their masters.

Moderator: What is HHV-6?

DrNicolson: Human Herpes Virus-6, a member of the Herpes virus family

Moderator: Is CFS a real disease, and is it really treatable?

DrNicolson: Yes, it is a real illness, and yes, it can be treated.

Moderator: Why are insurance companies hesitant to try alternative therapies for these conditions?

DrNicolson: I don't have an answer for this, but it may simply be financial. They are reluctant to acknowledge illness that have relatively non-specific signs and symptoms, fearing that too many people will claim that they have these illnesses.

Moderator: Is there a test to see if you have mycoplasma infections?

DrNicolson: Yes, there are tests to determine if you have chronic infections, such as mycoplasma, chlamydia, HHV-6, etc. We suggest the molecular tests rather than the antibody tests, because they are more sensitive and reliable.

Moderator: Can you tell me about the link between Brucellosis and CFS?

DrNicolson: We have found that a subset of CFS patients have intracellular Brucella species infections. Such infections may be important in causing signs and symptoms in these patients, similar to mycoplasma and chlamydia infections.

Moderator: Should all CFIDS patients try the doxycycline?

DrNicolson: Most physicians will not treat a patient unless a positive test result has been obtained.

Moderator: Can a mycoplasma infection be inherited from parents?

DrNicolson: Yes, it is certainly possible, because these small cell wall-less organisms can pass the blood-brain and blood-placental barriers.

Moderator: With regard to the question and your subsequent answer about "apparent" symptoms, what would those symptoms be?

DrNicolson: Chronic illnesses such as FMS and CFS usually present with multiple signs and symptoms. A more detailed list of these (often 20-40 different s/s) can be found on our website, www.immed.org

DrNicolson: FMS patients certainly show higher incidence of M. pneumoniae infections than found in the general population. Thus they appear to be more susceptible.

Moderator: Has there been any research done into the possible connection between CFS/FM and leaky gut syndrome?

DrNicolson: It is my belief that these syndromes are interlinked and probably due to similar insults on different organs and tissues.

Moderator: What is your take on Ampligen?

DrNicolson: Ampligen has been used to treat viral infections in chronic illness patients. Although the results have been spotty or in some cases inconsistent, this may be of value in certain subsets of patients.

Moderator: Just to help clear up, should people with FM also be tested for MS, and if so, what is the test for MS?

DrNicolson: FMS and MS are different illnesses characterized by somewhat different signs and symptoms, the latter concentrating on signs and symptoms related to the CNS and PNS.

Moderator: How does this long-term use of doxycycline affect fungal infections?

DrNicolson: Fungal infections can be a problem in patients who are on long-term antibiotics. We always suggest that probiotics be used and in some cases anti-fungal medications are necessary. Some new neutraceutical products that we are testing look promising in this regard.

Moderator: How close do you think researchers are to finding a test for properly diagnosing FMS & CFIDS?

DrNicolson: There are no specific tests or markers that are characteristic for FMS and CFS. Unfortunately, these chronic illnesses are defined by their non-specific signs and symptoms, and we have yet to find universal markers for them.

Moderator: I have been hearing about the role of hypercoagulation and CFS. Do you think it is legitimate and does the treatment have to be Heparin injections?

DrNicolson: We feel that hypercoagulation may be due to the types of chronic infections mentioned above. For example, mycoplasmas, Chlamydia and HHV-6 all cause vascular endothelial cell infections and result in vasculitis.

Moderator: I can trace many of my symptoms to a time when I had to have surgery. Following this I got my first cold sore, and my first sinus infection, which was followed by my first "flu" (which I now know was FM). How do I treat the possible staph infection and the HHV-6? I'm thinking this could be the cause and thereby the cure of my FM.

DrNicolson: As you infer, the link may be immune suppression which often occurs with trauma or surgery. This can lead to a variety of infections when the immune system is compromised.

Moderator: Do you feel that generally, the medical community is still grossly undereducated about the intricacies of these syndromes?

DrNicolson: Absolutely. It is often difficult to retrain physicians to think about chronic illnesses and the roles that immunity, endocrine status and chronic infections and other toxic exposures play in illness.

Moderator: To what degree can symptoms be resolved through diet?

DrNicolson: I feel quite strongly that diet is especially important in chronic illnesses. Unfortunately, most of us have very poor diets, and this needs to be corrected in order to balance our immune and endocrine systems. You may want to see some recommendations for diet for chronic illness patients (www.immed.org)

Moderator: Why does your lab only test for 5 mycoplasmas species?

DrNicolson: We actually test for additional mycoplasmas, but we offer a panel of the most commonly found pathogenic mycoplasmas.

Moderator: There is no cure for the herpes virus, so how do you help an FMS patient who has that virus?

DrNicolson: Unfortunately, there may be no complete cure for any of the infections that we have been discussing today. About the best that we can hope for is suppression so that they don't cause morbidity. We may never be able to completely eradicate these intracellular infections that hide from our surveillance systems.

Moderator: Once the mycoplasmas have been brought under control/eradicated, does the immune system generally return to normal or do most people still find it is compromised?

DrNicolson: Most patients will find that their immune systems gradually return to normal. For example, patients that had extreme allergies find that they improve with the treatment of chronic infections.

Moderator: I was found to have a carnitine deficiency and have been taking large doses of prescription Carnitor. Does this have anything to do with CFS? How do I know when to stop the treatment?

DrNicolson: It may have something to do with your metabolic deficiencies, but you should consult with your physician on when to take or stop taking certain supplements.

Moderator: What can we do as patients to heighten awareness with our own Primary Care Drs without offending them?

DrNicolson: This can be a problem. We find that many chronic illness patients actually are more up to date on many topics surrounding chronic illnesses than their primary care physician. This may be due in part to the limited time that these physicians have to spend on certain conditions.

Moderator: My earring piercing have been infected for about 30 years now, even though I haven't worn earrings in many years. I've asked a dr. before if the copious white substance could be staph and he said no. How could I find out for sure what this ongoing infection is?

DrNicolson: The material is likely puss, which is a combination of white blood cells, infectious agents and other substances. A culture can be taken, and this may reveal the type of infection that is present.

Moderator: If you were suffering from CFS what would you do?

DrNicolson: I have suffered from CFS, actually Gulf War Illness, from our work with veterans and their family members. These illnesses can be transmitted and we have documented this in immediate family members. In my own personal case, mycoplasmal and fungal infections were treated with a variety of antibiotics, antifungals, immune support, etc.

Moderator: How many mycoplasma species do you know off?

DrNicolson: There are 50-100 known species of mycoplasmas, but many of these are only important as plant or animal infections. In humans only a few have been documented to be pathogenic. This could change in the future as more becomes known about various species.

Moderator: Are there preferred antibiotics for each type of mycoplasma, or are there a select few that are effective against most/all mycoplasmas?

DrNicolson: We usually recommend rather general types of antibiotics, mostly because patients often have co-infections, and have different species present even of the same class of infection.

Moderator: How much do you think degenerative disk disease contributes to Fibromyalgia?

DrNicolson: We are interested in this degenerative process, and have found that most patients have mycoplasmal and especially chlamydial infections. Working with orthopedic surgeons we have documented these types of infections in the tissues.

Moderator: Do you believe there could be a connection with vaccinations and the onset of CFIDS?

DrNicolson: I believe that in certain patients the onset of illness occurred after a vaccination. In the case of Gulf War Illness, a CFS-like condition, the illness is strongly associated with the multiple vaccines given during deployment.

Moderator: Some other researchers claims that your PCR-Test for mycoplasmas in patients with Chronic Fatigue Syndrome is an inaccurate test. They claims the test is not detecting for mycoplasma infections. As a layman what should I think about this?

DrNicolson: The PCR tests that we use are the most sensitive and specific tests that are available for commonly used specimens such as blood. Obviously, the infection must be released into the blood where it can be detected, and this may be one reason that incidence of infection may not directly equate to blood test results. Also, we have found that some patients cycle in the presence of such infections in their blood, and we don't know the reason for this, but it might be related to endocrine and/or immune status.

Moderator: Do you advocate narcotic use for pain of FMS?

DrNicolson: Only your physician can determine if this is a suitable approach for your particular case. In general we have found that patients who have chronic infections and treat these successfully have less dependence on pain medications.

Moderator: Is there much help from trigger point injections for fibromyalgia?

DrNicolson: Certainly for pain control, but I am unsure whether this will actually result in long-term improvement.

Moderator: Are the intolerances or certain antibiotics such as penicillin due to a growth effect of these drugs on certain mycoplasmas?

DrNicolson: Antibiotics that cannot affect the growth of microorganisms such as mycoplasmas will result in many cases in growth stimulation. Although the reasons for this are not known exactly, it may depend on bacterial competition.

Moderator: In all of the 13 years that I have been diagnosed with FMS no one has run any tests for infections, how can that be?

DrNicolson: The role of chronic infections in conditions such as FMS are just beginning to be investigated. We now know that treatment of such infections is of benefit.

Moderator: If a parent was exposed to Agent Orange could it be transferred to the offspring?

DrNicolson: Chemical exposures, as apposed to biological exposures, are generally considered non-transmittable. However, pregnancy and other conditions may place additional individuals at risk for exposure.

Moderator: I have a rare form of scoliosis that developed in my late 20's. (C-shaped instead of the traditional S-shape) If this is caused by tissue damage from a mycoplasma or other type of infection, is my spine permanently damaged even if I clear up the possible infection? Or could the bones and ligaments restore themselves?

DrNicolson: Basically we do not know. However, we have seen some interesting repair of damaged tissues, such as nerve tissue, in patients with chronic infections. Similarly, in patients exposed to heavy metals or chemicals, their removal can have a beneficial effect and allow repair to occur.

Moderator: What medications to you recommend for fibromyalgia?

DrNicolson: That depends on a number of factors. Today we have concentrated on chronic infections, but I don't want to leave you with the notion that this explains everything about chronic illnesses.

Moderator: Do you think that treatment for FMS with antibiotics would be more beneficial than treatment with muscle relaxers and pain medication?

DrNicolson: This depends on whether you are interested in just suppressing pain or finding out underlying conditions that may be important in the process.

Moderator: How is chronic infection determined?

DrNicolson: We usually test blood of patients to see if they have systemic or system-wide infections. Depending on the types of infections found, these could play a major role in the disease process as a causative agent, co-factor in the illness or as an opportunistic infections that causes morbidity.

Moderator: Have you found any herbs, amino acids, etc. to be beneficial for FMS?

DrNicolson: There are a number of natural approaches to FMS that can be beneficial for many patients. Some of these are discussed on our website, www.immed.org, under Treatment Considerations.

Moderator: Okay, that will conclude our chat session! Dr. Nicolson had to run, and thanks you all for participating!